When Alzheimer's Strikes

Karen Zimmerman, 52, had always taken pride in her career as an event and convention planner, first in the hotel industry and later for a labor union in Washington. She worked long hours in demanding situations, but, she says, "It was very busy but enjoyable."

In 2007, though, she began to feel a bit anxious. "My supervisor started to treat me differently, but I didn’t know why that was," she says. "She tried to blame me for things." Because the supervisor had prickly relations with other employees, Zimmerman tried not to take it personally.

"But it got worse," she says. "I also had forgetfulness. I attributed it to menopause."

Her biggest fear was that she would be fired. "I was scared," she says. "I didn’t know why it was happening."

She eventually went to her doctor, who could find nothing wrong but referred her to a neurologist. After undergoing a series of tests, she waited nearly a month for the results. "I thought I’d get another pill and move on my way," she says. "But they told me I had early-onset Alzheimer’s and that that would be my last day of work." The neurologist believed the stress of her job, including severe insomnia, was too much for her to handle.

Zimmerman is one of an estimated 500,000 people younger than 65 in the U.S. who have early-onset Alzheimer’s disease or other dementia. Many, perhaps most, are still working—no one knows. Employees can often manage their symptoms in the early stages of the disease. If they do go to their doctor with concerns, they may still be in the dark. Two-thirds of primary care physicians mis­diagnose the disease in their younger patients, according to a study conducted for the U.S. Preventive Services Task Force.

As the workforce ages, the number of people working with early symptoms of dementia is likely to grow. Many large corporations hope to hold on to skilled employees past traditional retirement age. While most older employees are likely to be healthy, two out of every 100 people 65 to 74 years old have Alzheimer’s disease.

"It is a growing area of concern," says Ron Finch, vice president of the National Business Group on Health. "There is not a sufficient cohort of younger workers to meet the demand of many employers—especially engineers, scientists and those with real technical expertise. Employers will want to do everything they can to make sure employees can be productive and stay on the job."

"There is not a sufficient cohort of younger workers to meet the demand of many employers. ... Employers will want to do everything they can to make sure employees can be productive and stay on the job."—Ron Finch, National BusinessGroup on Health

An incurable disease Alzheimer’s is a slowly progressing, terminal disease of unknown cause. There is no cure. While aging boomers joke nervously about having Alzheimer’s when they forget a name, early signs of dementia go beyond memory loss. People may have difficulty performing familiar tasks, communicating and thinking abstractly. They become disoriented in time or space. In addition to Alzheimer’s, other conditions, such as frontal temporal dementia, lead to personality changes, with people losing social graces and becoming obsessive or apathetic.

"Those are the kinds of behaviors that really get people in trouble at work and at home," says neuropsychologist Glenn Smith of the Mayo Clinic.

Employers and employees alike have had little understanding about early-onset Alzheimer’s. "There is a growing recognition that this is a problem," says Randall Abbott, senior consultant with Watson Wyatt World­wide in Bos­ton, who advises Fortune 1,000 companies. "It is something that employers are trying to be more sensitive to, and also trying to alert their supervisors as to how to be on the lookout for some of the early signs. This is a very delicate balance. There’s enormous value to getting the person to a doctor, but you don’t want to walk around the workplace and accuse people of having Alzheimer’s."

Neither Abbott nor the Alzheimer’s Association of the National Capital Area, which this month is launching a pilot corporate assistance program for Alzheimer’s caregivers, could identify a single employer that has a policy or program in place to support employees who have dementia.

Indeed, there is considerable stigma around the disease, comparable to that of HIV/AIDS 25 years ago, says Tammy Reardon, corporate assistance director at the Alzheimer’s Association of the National Capital Area. "We’re trying to help companies be motivated to do right by their team, by their workplace family," she says.

Early diagnosis is key for both the individual and the employer, stresses Anthony Sudler, CEO and president of the association’s National Capital Area chapter. He notes there is a period of time when employees with dementia will be able to transfer the knowledge they have to their successors, "rather than have them drop out of the workplace and take all the historical knowledge and skill sets."

"There's an enormous value to getting the [employee] to a doctor, but you don't want to walk around the workplace and accuse people of having Alzheimer's."— Randall Abbott, Watson Wyatt Worldwide

Families would also benefit from knowing, so that they can plan for the inevitable financial hit when the person does stop working. Moreover, says Nina Silverberg, assistant director for the Alzheimer’s Disease Center program at the National Institute on Aging, "The medications can be most effective at an earlier stage in the disease, scientists believe," she says. "You want to protect the healthy neurons, and the more intact they are the better." Medication may delay the disease’s progression in some patients.

If the diagnosis is not Alzheimer’s or other irreversible dementia, the problem may be treatable. Depression, medication side effects, alcoholism, thyroid problems and vitamin deficiencies can all have similar symptoms. Silverberg urges people who are having cognitive problems to consult a neurologist or geriatric psychiatrist who specializes in memory loss.

Richard Taylor of Hous­ton was a practicing psychologist in his late 50s when he received a diagnosis of early-onset dementia. He quit his practice because he believed it was unethical to continue. He then taught psychology and business communication at a local university for three years. To do so, he developed an elaborate system involving assistants who helped him with planning, getting his materials to the classroom, grading—even holding up little pink cards during his lectures if he started to wander off topic. Finally, unable to keep track of his students’ progress, he retired.

Because of the autonomy enjoyed by professors, his deans never knew he had dementia until he told them. "Every one of them said, ‘Thank God you didn’t tell me.’ They wouldn’t have hired me if they’d known." Taylor says that twice during that time he won "teacher of the year" awards.

Today, he speaks around the country and publishes an online newsletter sent to 11,000 people, with the goal of putting a face on dementia and chipping away at the stigma and stereotypes.

"People are always looking at us to see what our deficits are," he says. "We’re still a whole human being, and that’s where people should begin. We have different skills, and they are diminishing compared to other people’s skills. But we’re not diminishing as people."

Lack of training Unfortunately, many supervisors lack the training to either recognize or compassionately respond to people who show signs of dementia. After leaving her job, Zimmerman discovered that her supervisor had been writing her up for poor performance. Experts urge employers to train supervisors and offer education to the whole team to raise awareness on behalf of those who have the disease, their working caregivers and the workplace itself.

There is a period of time when employees with dementia will be able to transfer the knowledge they have to their successors, "rather than have them drop out of the workplace and take all the historical knowledge and skill sets." —Anthony Sudler, Alzheimer's Association of the National Capital Area

Taylor urges supervisors to be supportive, as "opposed to being the policeperson." Ideally, he says, an employee would be told: "These are not the kinds of errors we generally see in you. But we’re still committed to you as an employee—we have a lot of investment in you. This is a new problem for us to solve. You want to keep your job and we want to keep you. How can we partner with you? It would help if you admit you have a problem instead of being so damn defensive."

All agree that because of the stigma and the fact that Alzheimer’s is a terminal disease, employers need to tread carefully, compassionately—and legally.

"The Americans with Disabilities Act doesn’t go by labels or diagnoses—it goes by functional impairments," explains Jennifer Mathis, deputy legal director for the Bazelon Center for Mental Health Law in Washington. "The test is: Are you substantially limited in a major life activity? I would say for many people with Alzheimer’s, they would meet that test. They will be limited in thinking, concentrating, interacting with others."

As long as workers can continue to perform their work with "reasonable accommodation," then they should not lose their jobs, Mathis says. Options could include flexible schedules, desktop reminders or assistance from a co-worker. "If in fact you could have been accommodated, and it would have been reasonable, and you essentially said, ‘I’m having trouble doing my job because of my condition. Can you help me out?’ and the employer says, ‘No, I’m going to fire you,’ you have a viable claim under the ADA."

Smith, of the Mayo Clinic, says that knowledge might have helped one of his patients.

"If ... you essentially said, "I'm having trouble doing my job because of condition. Can you help me out?' and the employers says, "No, I'm going to fire you,' you have a viable claim under the ADA." —Jennifer Mathis, deputy legal director, Bazelon Center for Mental Health Law

He recently saw a woman, 63, with early-onset Alz­heim­er’s who had just lost her job. She had 28 years with the same bank as a teller and would have been entitled to a pension in two years. "From the employer’s perspective, it was simply she wasn’t working at proficiency anymore. They could cite cause for firing her because she was making mistakes in her work. Her family brought her to the clinic because they thought she was depressed," he says. "Had she gotten a diagnosis before she was fired, she could have gone on medical disability and she could have gotten her pension."

Zimmerman was more fortunate. As soon as she received her diagnosis, she contacted her employer’s human resources department. "HR was really, really good to me," she says. She received full disability, and she and her husband will have health insurance for the rest of their lives—benefits many other workers would not enjoy.

She and Taylor stress that people with dementia still have contributions to make. Zimmerman now hosts at a restaurant over the lunch hour. "I still have clarity," she says. "I still can drive. I volunteer at the Alzheimer’s Association office, and I still help neighbors. I’m doing pretty well."